Carespeak & Care Plans

April 13, 2014

Sorry – I’m back on Carespeak again.

Yesterday, I posted a section from Steven’s final care plan. Although there is nothing particularly wrong with it, reading it back makes me cry. I find it so sad that a vibrant young man’s life can be distilled into 12 sheets of paper, with no room for any aspiration or uniqueness at all.

Here is the final paragraph again – “Outcomes”

1. To maintain physical health and well being and appropriate levels of hygiene.

2. Continued 2-1 support with day to day activities and accessing the community (via direct payments on the prepaid card). To be able to access resources in the community safely and to maintain personal safety and wellbeing. To have meaningful participation in activities that aid development and reflect Steven’s personal choice.

“Outcomes” is a funny word. I’m pretty sure that Steven doesn’t think of his life and what he does in terms of outcomes. It’s not a concept that I apply to my life either. Does anybody get up in the morning and think about their outcomes for the day?

There are a couple of points about the language of the whole 12 pages that really strike me. Firstly, there is a total assumption that the reader will understand all the jargon contained within it. There is no attempt to pass the report through the Plain English machine before posting. Back foot time. You have to keep asking what certain words mean and that creates a weird tension. Secondly, the plan reveals a whole set of attitudes that the professionals have about the learning disabled and it’s not very encouraging. It’s like the person becomes a non human exhibit – a project to be experimented on.

So what of some of the key words of the above paragraph? I wish they would drop this “accessing the community” stuff. Steven is the community. “Accessing” it means that he is on the outside of it, waiting to be given admittance. That reveals a strong attitude – “this is ours and you are not part of it unless we allow you to be”. And he can access “resources”. Does he? I think he goes to the gym and goes swimming and has a marvellous music session at the Arts Centre. Does calling these things “resources” make them sound more important? Does it make it sound like the LA have some sort of stake in them – like they’ve provided these resources? Everything Steven does has nothing to do with “service provision”.

What is with the stress on “hygiene”? It seems such an odd thing to have as number one “outcome”. Has Steven ever presented as being unhygienic? Yes, he might struggle is he was left completely to his own devices but why does it merit such emphasis as to appear as number one?

“Safety” and “safely” in the same sentence shows that Hillingdon haven’t let go of that picture they built of Steven back in 2010. Whilst you can’t argue with a desire to keep a vulnerable person safe, I don’t think that was why it warranted two mentions here. It was a harkback to their reports of 2010 for court and their “belief” that Steven could be dangerous. It doesn’t matter at all that there has been no incidents of aggressive behaviour since Steven left the Unit. Unfair and unworthy.

Finally, there is the usual stress that anything Steven does must be “meaningful”. Steven’s life does give him meaning but I don’t think it’s the same sort of meaning that the social care world has in mind. We’ve been to the Mencap Pool today. That means a lot to Steven – the place is full of love. And love makes it safe. But I don’t think the lA had love in mind when they’re talking about things being meaningful. Of course, in that word, we also see revealed that someone is judging what is meaningful and what’s not. Applying a set of values that may have nothing to do with Steven’s values.

“Meaningful” is linked in with “development”. That cranks up the pressure slightly. Not only must what he does be meaningful but it must also develop him as well. Steven reminded me last night whilst watching Toy Story that Woody taught him how to change batteries. That wouldn’t go on a care plan. It’s all about measurement. Everything Steven does has to be measurable in terms of his development. What a way to live a life.

And there we have it. That is Steven’s care plan. Nothing about love. Nothing about fun. Nothing about aspiration. Nothing about relatedness. Nothing about being human. I guess the RAS couldn’t handle ideas like these.

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Love?? – I’m afraid computer says no. Do we have to accept outcomes and care speak, do we have to accept these care plans worded as they do. My son is 18 at the end of this year and I’m dreading it with every bone in my body, but I will never let that on to those involved in the transition. It’s all about power, social services have the right to make any decision post 18. Yea right, as long as it falls between 9-5 and 4.30 on a Friday.

That bit bothered me, too. My daughter doesn’t want to “access the community”. She likes going out, when she can choose where and when. Like Steven, she has a very strong zest for life, and strong interests in weird things. She loves company, and chatting to people, but wants little to do with day centres or over-organised activities. The other night, she hid her shoes, because to her accessing the community sometimes means doing things that other people want her to do. I worry about it, a lot, because I know that in the eyes of officialdom this is not OK. I wish she liked these things, but she doesn’t. But, actually, isn’t it normal, in a way? We are not all “clubbable”. I don’t like being over-organised, nor does her sister. Don’t most of us do what we want, when we feel like it?

Our Care Plan is ridiculous. Short, badly written, irrelevant. The stress is on an “independence” that my daughter is quite well aware she won’t achieve, but that would be good for reducing her budget.

Where are the successes? When Social Services have total control, do they do it better? Does the jargon mean anything at all? My daughter has a combination of conditions that make “normal” hard, but I know more able people who are quite miserable and frustrated within this framework of “ought” and strange ideas of how people should live their lives.

Mark sometimes ‘all you need is love’ to the quote Beatles song is actually what they do not get from the people who make these ridiculous policies. I like the way you describe the Mencap pool as a place full of love. My son’s school was like that and his summers spent in the care of Mencap’s holiday scheme when he was a teenager. Going into social services care was described as ‘falling off a wall’ by a parent whose son had left education. In fact although his day centre was staffed by less trained people than education, it did have a sense of ‘belonging’ for him because a lot of his friends from school were there.

Like Liz’s daughter he did not like the ‘out in the community’ shit that was forced on him and many others. They are lonely now. His choice was to reject it, it did not come up to expectations, the LA lied about how many choices he would have. No more woodwork, no more touch screen computers and no more fun. It would have been easier to put what he did not like on his ‘person centred plan’ (one sheet of paper hurriedly written one afternoon in a day centre room), he might of got what he wanted then. He no longer resembles the happy, caring man who used to enjoy life so much. He is broken. We are broken too.

Trouble is, my daughter THRIVES on being on being able to make her own idiosyncratic choices – but they risk being isolating. I have been able to use a personal budget to give her more of a sense of control of her own life – but not the judgement to go with it. A good, experienced, energetic, support worker can find ways of motivating her (on a good day) but those who defer to her choices can’t. And what few things are available lack flexibility. Maybe it is the community that is the problem, not our charges.

It sounds to me that the ‘battery experience’ is very much a desirable outcome. It’s all in the phrasing after all. If you said that Stephen ‘achieved a learning outcome in general maintenance of electronic equipment by accessing an audio-visual resource and furthermore was able to successful in accessing the community and relate said learning outcome via verbal communication to his male parental unit.’

Why is it we millions of carers struggling with social work / services meaningess assessments and outcomes for individuals they have little knowledge of, if at all, with nonsensical ideas of ‘outcomes’ which have no bearing on real lives of real people, put up with the system?

Why is there not a mass write in to MP’s / prime minister to rd us of these power crazy control freaks denying family and love? I fail ti understand, when increasingly we have a failing political system and government that more cannot be done to get rid of those on the ‘mass public sector gravy train’. It is as if we have forgotten women did not get the vote until they took action, and that was not so very long ago.

Many carers become serious ill and have shorter lives, the stress is great (I now have joined this group prematurely) why is this allowed to happen in a country that once saw fairness and justice as principles to uohold?

The Care Bill will change nothing- it is just another PR exercise for the government ministers involved. Social workers with their MOn- Fri 905 jobs are not going to be theee for those we care for when we can no longer be there, why is this so little understood? Large Carers Charities are self promoting,,offerng well paid CEO jobs to the few, so where do we go to make waves as a significant voting group? I despair at my experiences and those of others here and elsewhere I read.about:a

An important point here is that this SW/Adult Care jargon bo–ocks, that is assessment language (not my usual choice of phrase but is apposite here ) is read out to people with a learning disability as though they can understand it. Family carers who have read more than one hard book without pictures, and who watch (and even enjoy) the boring channels on television and ……………..and ……even have an ‘ology ……need a ladder to climb over it.

People with PhD’s go slack jawed ……. rocket scientists are mystified. ‘What are they saying”……how often have you/we looked at other parents in carers meetings and mouthed this to each other?

I have to watch lips glued, so not to influence the outcomes and personal choices of my uncomprehending son.

He is asked if he understands, he says he does and smiles. His life, and choices and the paper is signed.

Keep em clean- keep em safe – keep em happy! The mantra of institutional care of bygone tears still lives on in these so called care plans; usually drawn up by ignorant, unqualified, council employed drones obsessed with “policy and precedure”. It makes them feel terribly important. I never sign them as you don’t have to if you disagree with them or if they are inaccurate, which they always are.

We are all saying the same thing. Whether our son’s and daughter’s are children or adult, they are all learning disabled and vulnerable. We parents, grand parents or brothers and sisters are all saying the same thing: this ‘care’ system is broken at best, dishonest at it’s worse. There are strong legal protections and safeguarding regulations that all LA’s should follow, and they do not. Only those with someone capable… age, knowledge, and/or residual energy allowing of fighting on, is helped to get a better safer care deal through a lengthy legal battle. The isolated and lonely rest can go to the wall. Within the current poor services, many many people who live alone with their learning and other disabilities are not clean, safe or healthy. No need to read statistics to know that the NHS fails our son’s and daughters, and without our family vigilance they would get very ill and potentially worse.

We have little energy left to get angry, and just thinking about how TOTALLY wrong and dangerous and worse than very, very wrong all this is, uses up even more of our small reserve of energy. When things go very very wrong and our son or daughter is killed through negligence as Connor Sparrow Hawk was, we all know that we parents are all only inches daily, from the same life long grief.

And at the same time we read this gobbeldey gook care speak, from the people who have the power to lift our sons and daughters into real and happy safe lives, and who could give us parents and our non disabled children’s some form of a normal life back …..pretedning that all this personalised blether is designed for us and ours. And at the same time they take from us all that we are and have become in our lives, and accuse us, mostly, capable, caring, loving and intelligent mothers and fathers, of being unable to advocate or care objectively for our loved one. They snatch this absolute power to themselves 9-5pm and 9 -12 pm Fridays?..Evening, weekends and their annual holidays (” I am on leave until. etc etc ” and no one ever covers) all a care vacuum where all is returned to powerless and incapable us.

They seem to live in a cloud cuckoo land of self deception. But, I meet many good paid people who know that all this dogma is just smoke blarney and professional gobbledy gook; good paid people who know full well that that these assessments are just tick box hollow exercises in deception. They know that in reality all this is really about is cutting LA revenue costs and LA head count. But they are permitting the insidious growth of the parasitical brokerage etc etc ‘fleas’ that feed on us and ours. These good and compassionate caring hard working people, who know all of this, should be standing up shouting ‘NO MORE’ will we collude in this”……orany longer use the shameful justification ‘I am only doing my job’……..which proved so effective 50 years before?

Care managers and all the rest who see this naked king, stand up challenge the blind dogmatists in your teams, listen to us, help us, for in truth we are all so very very weary doing all this worrying, and challenging ………………………and all the sums and caring too………………………

Well said Weary Mother. It is the kind caring people in the system who do know what they are being asked to do is wrong, but for lack of courage do not speak out against the system. People who I like but have lost respect for because of the way they turn their heads the other way. They know who they are, the pyschologists, the epilepsy nurses and the people who see what the carers are going through but still do not speak up.

Mrak, when I hear or read carespeak tosh-usually said as if the speaker is laying down a great truth-I am angry. Often the people laying it down seem to me none too clever and arrogantly convinced that they are. There is a world of difference between expressing yourself clearly so that you are understandable to your clients and their families, and insulting their intelligence by using drivel .
Really clever well qualified people usually express themselves clearly. Its in the IQ test for crying out loud! There’s a whole section in which you win marks for being able to give a definition clearly and briefly !
The very word “access” is sickening.This isn’t a case of using a techincal term because its required (say, in a medical report) its a case of trying to, as you so rightly put it, lay claim to services which have nothing to do with them. Rather like being paid to provide accomodation, not doing so, but writing reports raving pompously about the facilities of the nearest bus shelter/park bench.(“Mr X is able to access the resources of the park bench of his choice at a time which suits him”)
OK so what they are really saying is that Stephen needs 2:1 out of the house, 2;1 out of it, help with self care, help to do the things in the community which he enjoys. (List) Any other goals? Yes/Not this time. Done! And nobody has accessed anything!
There should be a specific school of therapy to help parents depressed by reading drivelling reports and care plans about their LD children.

It’s interesting that in relation to an article about using universal ‘carespeak’ and a system which is putting people into categories and tarring people with the same brush, some people commenting aren’t being particularly careful with their own language.

The “they” that you mention – is there even a slight chance that not everyone who works in those environments is exactly how you paint them out to be?

I don’t for a second think that most people meant to imply that they are. I’m more tempted to think that some people commenting don’t actually think that every single one of the people working in the care environment is the same tick-box checking, outcome-driven zombie. Maybe some are; maybe some aren’t.

But, it’s worth noting that some people aren’t always making that distinction clear.

My point being that the language used doesn’t necessarily reflect the feelings of the user. Just as it doesn’t necessarily reflect the feelings in the people making comments here, perhaps it also doesn’t necessarily reflect the feelings in the people writing those reports and care plans.

Weary Mother
“These good and compassionate caring hard working people, who know all of this, should be standing up shouting ‘NO MORE’ will we collude in this”

Well said. But what do those people do in the mean time, before they see the change that it appears everyone seems to want?

Good people can resign from jobs which at best offer little to the most vulnerable and at worst cause harm. Evil flourishes when good people do nothing. If they do not resign they must make serious waves and become thorns in the flesh of the system in collaboration with others like them- to effect change. To do nothing is to collude- then you deserve to become ‘they’ we speak about.

I know quite a few professionals in the adult social care world for whom their integrity is very important. They stand up and speak their truth and often get to pay a high price for their values. You dont have to play the game to survive in that environment. But like all jobs – if the challenges weigh too heavy – get out

I agree Edna. But standing against the crowd, especially where the crowd has strength and can set the agenda, – Local and National p/Politics in particular, is never easy. It is probably why all the real improvements in care have been hard won by people outside the Statutory services. Namely parents etc and people who determined to improve things have left Statutory roles to work in the voluntary sector or work independently.

A sensitive and beautifully moving poem was circulated widely in the care world, in the eighties and nineties. It was called ‘Look at Me”,. it seems useful in this conversation. An worn out old woman is dying ignored in a hospital, and she asks the busy nurses to see ‘her’. She describes very movingly herself at her mother’s knee, a baby then a child. As a young girl out at play, as a young woman in love. As a young woman with children of her own and as an older mother watching her own grown children. And then as a widow mourning her love. ”Look at Me”.”Look at Me”.”Look at Me”.

An angry nurse wrote a nurses response to the above, called ”Look at Us”. In the lengthy parody of the old woman’s poem she described a nurses life, and how she and her fellow nurses were over worked and under valued. She had missed the point entirely…………………..?

Why we need more people in the caring profession to stop and listen to the carers/parents is because our loved ones have no voice, no power and are utterly defenceless. There to be done to. Imagine what it must be like to have no autonomy and no way of changing your life because you just have not got the right words or even no words to explain how you feel or what you want. To be totally reliant on the goodwll of the people who happens to have the job of looking after you that day. Imagine what it must be like to be given medication to keep you calm because you are angry with your life and then imagine what it must be like to not be able to explain that this medication is giving you terrible nightmares or making you feel dizzy or tired or making your body ache. They just have to suffer it. There are psychiatrists who know that our loved ones lifestyles are being damaged by all the radical changes taking place in social care and that these are leading to much distress for families and yet instead of making it known to the powers that have made these changes, they decide to medicate them with mind numbing pills. Pills that often have awful side effects. Our loved ones cannot say ‘I do not want them’ like the rest of us can.

Remember also people in the caring profession have the freedom to walk away. Most of us with disabled love ones have not got that luxury.

Whether anyone gives a positive response as to the experience of care services is contingent on their background, age, education and ability to assess different options meaningfully.

Those who are young, vocal and have full mental capacity may well have fought for what they want successfully- so may be more satisfied. Those who have no voice or are totally dependent on others fall into two camps; those who can find ways to communicate e.g. Stephen Hawkins, Tony Nicklinson, Yet they may be ignored by those in power.

Others, like people with learning dissabilities/ dementia and many older people will have little choice as to what happens to them and the latter are known not to complain for fear of retaliation or the withdrawal of help and many have a ‘we should be grateful’ type mentality, so do not express their unhappiness at the care they receive even if they are getting poor or inapppropriate care.

In the papers this week is the experience of those who would complain about public services and it is damning of complaints systems. That is why case review follows case review without any real change in the systems of ‘care’. It is also why control is increasingly exerted through court of protection routes. It keeps those who wield power in jobs.

Social workers get blamed if they do and if they do not. But many social workers are not allowed to do a social work job due to the administrative nonsense being directed to them by the senior managers in most Social Services of Local Authorities. These are the faceless people the like of family carers and persons with disabilities are not allowed to speak to.

They are the jobs worths who feel they are saving spending public money on the care and protection of persons who need the money to ensure they receive the care and protection they require to live their lives.

In the posts already made there are no truer words, for this is the reality of social care in the UK today, whether it be in a care home or a persons own home.

Many safeguarding incidents have been reported regarding care homes, Winterborne View being only one, but there will be many others still to surface. The same will be said regarding care in a persons own home. Safeguarding of persons who may be at risk should be the prime consideration of all persons involved with care, but for some Local Authorities it would appear it is not. That is until a safeguarding issue surfaces and then the LA will come out with the phrase ‘lessons will be learnt’ But are they ever?